Olivia's eating

Several of you have asked about Olivia's eating the past few weeks and I realized I never blogged about her swallow study that we did in March at Arkansas Children's Hospital in Little Rock.  After consulting with the nutritionist, speech therapist and developmental pediatrician at the UAMS Center for Children in early March, it was decided that it would be very beneficial for Olivia to have a swallow study done so we could know for sure if she was aspirating or not during feedings.  Aspiration can lead to lots of other eating and digestive problems so the sooner we could get that figured out the better.  Olivia had one swallow study during her time in the NICU but there was little to no signs of aspiration so deep down in our hearts we knew that wouldn't be an issue but we needed to rule it out to figure out how to help Olivia gain weight.  So off to Little Rock we went.

Fortunately, Jason has a flexible job and was able to go with us.  And we got to stop in Conway and see my sister.

This girl wasn't sure what to think about this big hospital!

And she gave us quite the challenge to get her to eat during the actual swallow study.  Swallow studies are quite difficult because of the positioning and surroundings in the x-ray room.  Olivia was basically sitting up and I was standing in front of her attempting a bottle.  The first try was a complete fail.  Olivia was screaming and not even wanting to try the bottle.  Unfortunately, Children's books swallow studies pretty close together so we only had a window of about 15 minutes to try.  After 10 minutes the nurses suggested we just give her some time and maybe they could squeeze us in again after the next baby.  I was SO discouraged.  We had just driven 3 hours and it wasn't looking like we would even get to do the study.  Jason sent out a prayer plea to several friends and family members while I met with the speech/feeding specialists.  And thankfully my sister spoke up and asked for another chance at the swallow study.  We were determined to not come back to NWA without it! :)  Thankfully we had about 10 minutes between two other tests for the doctor to see us so we were able to try one more time.  And the second time, Olivia did phenomenal!  She drank like a champ and didn't even fuss in the chair.  And PRAISE THE LORD there were no signs of aspiration!  In fact, we only had to do one round of thickness (which was actually just her milk with no additional thickening agent) to get the answer we needed.

We finished a little interview with the feeding specialists, got our discharge papers and were on our way back to NWA.

Sweet baby girl was completely worn out!  She did great on our day trip to and from Children's Hospital and we were all so very thankful to be home and with great news!

 

To those of you who have been praying, THANK YOU!  This has been and will continue to be a long road for Olivia but thankfully we are on our way to finding answers to Olivia's eating issues.

she's growing!

Well, Olivia is finally growing at an acceptable rate for her doctors and we couldn't be more excited!  Though she has always shown weight gain at doctor appointments, it was never a significant amount of weight.  But this week we had two appointments, one with Olivia's pediatrician and one with the neurologist, and both doctors said they were pleased with her growth over the past few weeks!  Seriously, I was so happy to hear that they were pleased with her weight....those words haven't been spoken about her growth/weight since we left the NICU.  I may have shed a few tears of joy while driving home because I finally feel like we are on the right track with Olivia and getting her figured out.

I think this girl is finally figuring out what the doctor's office looks like.  I've gotten this look several times before doctor appointments this week.

In fact, just over a month ago, Jason and I had the conversation that we would be okay with getting a feeding tube for Olivia because feeding times had become so stressful for all of us.  There were many days that I would be in tears with how long it was taking Olivia to eat, how much she was throwing up or just how difficult it was to feed her.  Most of Olivia's feedings were (and some still are) done with us bouncing on an exercise ball in the middle of our living room just to keep her calm so she can stay focused on eating and not just crying. (Special thanks to some precious friends for this tip when dealing with a fussy baby!)  Fortunately, we have doctors and therapists that didn't give up on us fighting to not get a feeding tube and we changed formulas again but found something that Olivia tolerates well and seems to enjoy.  With the encouragement and support of Olivia's doctors and therapists, we have FINALLY reached a "normal" baby daily growth rate and Olivia is slowly making her way back on the growth chart, weighing in at a whopping
11 pounds 14 ounces and 24 inches long.

precious clean baby :)

So our hard work is beginning to pay off and though we continue to struggle at times to get Olivia to eat, things are SO much better than a month ago.  I finally feel at peace and at ease with her growth and I'm not constantly worrying about her eating or weighing her all the time.  Though we do have to still increase her calories and keep track of how many ounces she is getting each day, we can rest a little easier and that makes feeding time more enjoyable for all of us.

another EEG

Last week Olivia had her fourth EEG since birth.  It was a bit of a last minute thing because Olivia began showing signs of seizure activity a few weeks ago and despite an increase with her current seizure medication, we began seeing seizures more frequently and for longer periods of time throughout the day so the neurologist wanted another EEG to better assess what is going on in Olivia's brain as she is growing.

Fortunately, we were able to do the EEG locally and we got to have the same tech as last time so it was a familiar thing for all of us.  Most of Olivia's seizures occur when she is waking up so the tech wanted her good and asleep so we could wake her up and watch what happens.  This girl was snoozin!

And was not too happy with us when we woke her up....

She had one of her seizures during the EEG so the tech got a really good picture of what happens, both in her brain and physically. 

 

We were told they would send the EEG to be read in Little Rock and then we would hear back from our neurologist locally by Thursday.  Well, I got a call Wednesday late afternoon from the nurse that the neurologist needed to see us Thursday morning because Olivia's EEG was definitely showing signs of seizures.  Even though the EEG confirmed what we had been seeing at home for a few weeks, hearing that we needed to see the doctor as soon as possible sent Jason and I into a bit of a tizzy Wednesday night.  Fortunately, we had small group that night to distract us a little and also to be prayed for by our amazing friends.

 

                                      

So Thursday we went to see the neurologist and Olivia wasn't too excited about being back at the doctor. Ha! 

 

We kinda went in with our minds set on the worst case scenario so what we were told wasn't too horrible.  Olivia is having infantile spasms, which is basically a form of epilepsy.  Of course we have known since Olivia's birth that she would be at risk for seizures but we were just praying that with medication, seizures would never happen.  However, our neurologist told us that the type of seizures Olivia is having is very common for babies who go without oxygen for a period of time during birth.  And it is definitely common for these types of seizures to manifest 4-10 months after birth so with Olivia being 6 months old, the neurologist said she wasn't surprised this was happening.  We have started a new type of seizure medication that will hopefully "cure" these infantile spasms and we prayerfully will never see them again.  The risk of the new medication is peripheral blindness so we are praying hard that that doesn't happen to Olivia.  And after only three days of this medication, we are already seeing a reduction in Olivia's seizure activity so we have full confidence that this medicine will take care of these seizures and hopefully Olivia won't be on these medication for more than a few months, which will also reduce her risk of peripheral blindness.
 

Even in the midst of all the unknowns about Olivia's future, we know that God is good and His plan is so much greater than ours...and that is the truth that we have to cling to to make it through each doctor appointment with Olivia because it is so difficult as parents to know there is nothing we can do to "fix" Olivia....it is simply our job to love her and trust God with her life.

weight check!

Yesterday was the "big" weight check appointment with Olivia's pediatrician.  Olivia has been eating well and we have noticed a gain on the scales at home but Jason and I were both still so very anxious for this appointment.  I am happy to say that she finally broke the 10 pound mark!  Olivia is weighing in at 10lbs 4 ounces this week!  The doctor said she was happy but we still have quite a bit of work to do to get her where she should be on the growth chart.  We will go see Olivia's developmental pediatrician and nutritionist in a couple of weeks and they will help us determine what other things we can do to help Olivia put on some more pounds.

I so wish her chubby cheeks were an indication of her weight! :)

So very thankful for Jason and his willingness to take time away from work to be with me at Olivia's doctors appointments.  Olivia is very lucky to have him as her Daddy!

Thank you so much to everyone who has been praying for Olivia.  It is truly humbling to receive so many sweet messages, texts and emails checking on our baby girl week after week.  We so appreciate the prayers and encouragement as we walk this sometimes stressful and overwhelming path.

our week

Last week was a tough week, to say the least.  I posted last week about how much we needed Olivia to gain some weight by Tuesday (tomorrow) but unfortunately that hasn't seemed to have happened like we hoped.  We don't know what was going on with Olivia but from last Wednesday night until Friday morning, Olivia basically threw up after each bottle.  It was probably the most frustrating and sad 36 hours we've had around here in awhile.  We have weighed her at home several times over the last few days and we know she lost about an ounce-ounce and a half and I honestly felt defeated.  She is back up to her original weight (9lbs 14oz) that she was at 2 weeks ago but we were fervently praying she would break the 10 pound mark by this weigh-in at the doctor scheduled for Tuesday (tomorrow).  We tried every combination of formula and rice cereal we could think of but the girl just couldn't keep anything down.  We have no idea if it was some random stomach thing or severe reflux but whatever it was, we couldn't figure out how to help Olivia. It broke my heart because I knew she was miserable and I couldn't fix it.

Olivia is not a fan of the scale but it is a regular part of our day right now so she'll learn to get used to it, I'm sure. ;)

Olivia also had lots of baths!  Thankfully she didn't mind it and it was actually a calming place for her.

I'm not sure what happened, since we didn't change anything and went back to a normal bottle, but finally over the weekend, the throwing up stopped.  Praise the Lord!  We have now gone more than 24 hours without any throwing up!

Jason introduced Olivia to laughing babies on YouTube.  We aren't sure what she thought of it but she stared at it for a few minutes and we are pretty sure she chuckled at one of the videos.  It was the funniest noise I've ever heard!  We can't wait for her to giggle more!

Unfortunately, Olivia's doctor is sick this week so our appointment for weight check will be next Monday.  But, as Jason said, God is giving us some extra time to get some weight on our girl so we don't have to start taking more drastic measures.  I'm so very thankful for such a sweet husband who always puts things in perspective for me when I am on the verge of tears.  God knew exactly who I needed to walk alongside me during this time of life.

On top of Olivia's struggles last week, sweet Hannah came down with a horrible cough.  The minute I heard her coughing, my wonderful Mom came and took her so we could protect Olivia as much as possible.  Hannah spent 4 days at my parents' house while we tended to Olivia.  Again, so very thankful to live close to my parents who help us out tremendously and sacrificially.  We honestly wouldn't make it through most of this junk without them here.

I was so glad to have Hannah back home!  We spent a lot of time cuddling this weekend after 4 days apart!

We are praying for an uneventful week with Hannah back at school and therapy appointments for Olivia.  I'll update later with several praises about our sweet Olivia and some fun things Hannah has been up to!

BIG prayers needed

I am SO behind blogging and want to catch up on all our fun Christmas things but wanted to share what Olivia has had going on this week and ask for prayers for our sweet baby.

On Tuesday, we had an appointment with the neurologist.  And though things seem to be going well, we have reason to believe that Olivia is having some seizure activity pretty regularly.  It isn't like the seizures that we all see on TV or in movies so we aren't completely sure what is going on but some of her movements are a bit odd and the doctor believes these movements could be seizures.  We are increasing her seizure medicine and praying this will fix the "ticks" that we see happening.  If not, we will be going back in for an EEG soon.  We REALLY don't want to have to do that again right now so please pray that the increase in medicine will reduce (or eliminate!) these odd movements.

We also met with the nutritionist on Tuesday because Olivia isn't gaining weight as she should.  She is now in the 1% for weight.  She's also in the 1% for height and head circumference, so she's proportional just not growing at the rate the doctors had hoped.  It is SO important for Olivia to be gaining weight because her brain needs as many nutrients as possible but if she isn't gaining weight there aren't a lot of "extra" nutrients to go around to make the healthy parts of her brain develop as necessary.

On Thursday, we had Olivia's official 4-month check up.  After we met with the nutritionist on Tuesday, we were instructed to change up her formula intake a little bit to try and get more calories per ounce in her bottles.  Unfortunately, Olivia did not tolerate the higher calories and threw up after most of her bottles on Wednesday.  So, she didn't gain any weight at the doctor on Thursday.  She didn't lose any but the nutrtionist really wanted her to gain at least an ounce in that 48 hour time period.  Now we are simply trying to get her to finish each bottle (4 ounces) and keep it all down for the next few days.  I will talk with the nutritionist again next week and take Olivia back to the pediatrician in 2 weeks for a we ight check.  The doctors are running out of options to increase Olivia's calorie intake so we are praying that big things will happen in the next few days and weeks. Will you please join us in praying Olivia will gain weight?  We are desperate for our sweet girl to grow!

 

Sweet sister snuggle time after a hard week.  LOVE these girls SO much and am SO blessed to be their mommy!

when we haven't been at the doctor....

Even though most of my time as been spent in a doctor's office the past few weeks, I am glad to say that we have still made time to do some fun things to celebrate the holidays and make great family memories!

Before Thanksgiving, we went to the Lights of the Ozarks parade with some sweet friends.  Lights of the Ozarks is seriously my favorite thing about Fayetteville at Christmas.  And it was the perfect way to kick off the holidays!

These two loved the lights, dancing to music and bundling up together.

These girls did a little window shopping at some of our favorite downtown shops.

Checking out the Christmas trees on the square.

 

We also had a neighborhood Fall Festival.  It was so fun hanging out with neighbors that we love and meeting new neighbors.  I am so thankful for where we live!

 

 

One Sunday afternoon, Rebekah and I took Cilla and Hannah to see Beauty and the Beast.  Hannah loved it....especially getting to dress up like Belle!  I love doing fun, girly things with her and her friends!

 

Hannah went camping with my parents.  She had a blast!  And how old does she look in these leggings, shirt and UGGS??  What happened to my baby??

 

Jason and I got to go to a Friendsgiving/Holiday Dinner with some sweet friends that we don't see very often.  It was nice to have some adult time during the craziness of the holidays!

 

We've had lots of fun and are enjoying the holidays to the fullest this year!  We've had lots more fun things going on getting ready for Christmas and I can't wait to blog about it all! (One day I'll actually be caught up.... :))